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Joyce Arline

Member
Joined
Jul 31, 2010
Messages
17
Reason
CALS
Diagnosis
05/2010
Country
US
State
Georgia
City
Suwanee
I am concerned about my friend who was diagnosed 5/10 with ALS. His condition is rapidly deteriorating and he is basically bedbound now. His breathing is becoming worse and worse every day. Tried the BiPap but couldn't handle it. On cough assist which last week helped but less helpful this week. Breathing is worse every day. I read that oxygen is contraindicated for patients with ALS but is there any time that it is used for comfort measures. He is on hospice and has been taking morphine and ativan. He also is having problems with constipation. Able to eat a little but no appetite. We have a hoyer lift to transfer him from bed to recliner. He is very disgusted with this disease. Any thoughts especially about use of oxygen?
 
O2 use

I have a blog that explains about its use for PALS.
 
Thank you Joel. I guess that the only thing that can help now is the comfort meds. I will be with him on Thursday to see what is going on.
 
Hi Joyce Arline,
I have been told that pain meds can cause breathing to be worse. Since he is on morphine and Ativan, these could be helping him in one regard, but causing breathing issues to worsen too.

My best to you, your friend and his family.
 
Any other ideas for coping with this labored breathing?
 
I don't know of any other way to deal with it except with a bipap or trache/vent. Maybe a diaphragm pacer?
 
Thanks Joel. The respiratory therapist is visiting him today. I will call his wife and ask re diaphragm pacer. I'm flying up to Saranac tomorrow to help with his care. Just got a call from his daughter who stated that he is completely immobile now. unable to use hands. Sleeping in recliner. Has a cold and hospice MD has ordered a decongestant which has helped some. He does not (or did not) want a trach. Tried the Bipap but he couldn't handle it. (felt like he was suffocating). At present he is on higher dose of morphine and ativan. I know that one of the side effects of morphine is reduction of respirations but hospice uses it to make the patient comfortable. It also gives the patient a feeling of wellbeing and tends to 'deepen the respirations'. I am a hospice nurse and have used this combination for most of my hospice patients with good results (calms them down and lessens labored breathing). HOWEVER, I do not know that much about end stage ALS and also when the ALS patient is transitioning. So I am looking for comfort measures for my friend to help make his journey easier. And I know that if anyone had the answer to that they would be a millionaire. It just helps so much to talk about it here. He wants the end so much. Hospice has been extremely helpful to them.
 
Hi Joyce Arline,

I don't have any information for you, but I just wanted you to know that I think you are an incredible friend. My husband is very lucky to have a few special people in his life, too. I hope when the time comes, they will be with us to help make the journey smoother. My best to you all.
 
I just want to "second" what Missy said. Prayers are with you.
 
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